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Indian Organization for Rare Diseases


Address

699 Apache Lane
St. Paul, Minnesota 55120 USA


Description

"The Indian organization for rare diseases", for short I-ORD was conceived in 2005 and is incorporated as a not-for-profit organization in India as well as in USA with the help of friends, colleagues, relatives and many who believe that “it is the right thing to do” for Indian rare diseases community.  It is the umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care provides for rare disease.

India does not have definition for rare diseases.  Multiple languages, multiple cultures and host of other factors contribute to ineffective communication.  Sixty percent of Indian people live in rural areas with poverty and un-education.  Government of India has no public policy, no needed number of trained doctors or diagnostic labs etc.  There are no incentives to Indian pharma industry to develop orphan drugs.  It is hard to find the information on rare diseases either for families or professionals.  There is no awareness of rare diseases throughout the society and problems are compounded by un-education and poverty.  Rare diseases are treated as social stigma by the society and invariably the burden falls on the mother more than father.  The families affected by rare disease are isolated in their communities with little or no access to disease specific information.  I can go on and on.  Many issues that prompted us to take action and led to the formation of I-ORD.

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